This article is the oposite of my experience but if it's true we need to know. it can change treatment and answer questions about dementia. this article talks about acetylcholine deficiency as a biomarker in untreated pd/ has NIH everdone this in untreated pd patients?. debi, are they already doing pet scans for acetylcholine in the biomarker study?

iF not would you please , please again, consider adding it to the study? it would change a lot of our thinking and ,i have a feeling it will be responsible for close to the same amount of symptoms as dopamine deficiency but i'm not convinced it's a deficiency of either that is the culprit.=it may look like a deficiency.i will add resources at the end.

Dopmaine is actually an inhibiting transmitter but through inhibition it excites. that sounds like a paradox but it's true.

i have artcles that say the opposite about ACH, and feel that my acetylcholine after 20 years is not deficient; i wonder if it is responsible for dystonia and if i sleep well after taking nortriptyline, which has anticholinergic properties can sometimes avoid the a.m. trip through the land of dystonia where i an frankenstein wearing my best stroke look. but i can talk clearer than i will all day.

threats to my safety are everywhere you turn as i injest 7 pills and at least a half bottle of water. it is hazardous to go to the bathroom but i must and need to get more safety bars. i have some.

Must warn you I had a major silly attack at this point and suggest you skip a bit of this thread and read where science resumes. Unless you are feeling silly too. See article at bottom of this post. It is a serious request but my science capacity was depleted.

I've gone through thebathroom window ..sing it Joe C. "she came out through the bathroom window .... body half inside half out......it was an awesome wonder..hands were outside seen but she was stuck inside...can anybody help her...."etc etc.

this is how we used to chat ten years ago...silliness could burst outat any moment. it was clean and fun. this is fun to me - i'm not drinking or smoking anything, just sinemet and a feeling of good will.

We think we have found a way to get out of debt and i feel trips coming on. no we aren't taking a bail out or walking away. so that frees me and some money to travel.......i need a driver and sponsorship to take a USA tour of neurotalk members homes, yes i'm inviting myself and anyone who accompanies us. it we can get an RV we wouldn't need to stay in your house. anyone who has a normal person who can drive for six months? people could take turns, perhaps reitred spouses or unemployed adullt children. this would be an awareness but a fundraising trip and the proceeds would go toward pET scans for newly diagnosed to measure acetylcholne.

we could have daily web broadcasts from your homes, clinical trial centers, universities, foundations celebrity home tours . attention tall gorgeous brian basketball player in Denver or somewhere and Ryan and Scarlett i'd like to meet you and your dad. we'll soon have non profit status and if you are interested in driving or sponsoring something like this let me know and i'll begn serious planning. we could leave in the early spring or even sooner in the southern states. you , the people on this forum and in the pd community. This objective would be to raise money for research but it won't just be any research; it will be a patient generated project that incolves a quick result. like PET scanning for acetycholine. We could colllect data along the way about incidence, cluster locations, any particular type more prevalent in cetain areas, so many things to think of. we are there to educate people and learn from everyone we visit, then share it and apply it. i'm not interested in what cannot be applied or what will take too long. Thebiomarker study is imperative for my children andgrandchildren. i want to leave something positive in a future that has no dream waitingfor them. i'm trying to teach my entire family that you still can accomplish what you wish to, if you are determined enough. i usually do what i set out to do with a goal in mind that can be met. i see this as one that could be met after we finish the book and could be the first objective of our pcc site, which is by the way, everyone's creative collective site. no leaders.

i see us needing breaks and not being able to handle the grind for maybe any longer than1- 3 months at a time with reinforcements on call. but this is the ultimate trip we all wanted to go across country as young adults and mst of us probably did, but this is like charles kuralt wthout the 'other woman" and it's afundraser to determine the role of acetylcholine and i haven't even gotten any opinions yet from any of the people i volunteered.

no one is obligated of course, but its one way to have research that we place a priority on performed honestly and under our supervision with patient raised funds. think about it....i think its doable and nothing is going to change unless we think outside the box. we need to fund our own research or parts of mjff that we like.

This is doable for some of us who are adventurous and so committed that we'll do it till we drop . it's just too cool of a challenge. ok now i'm getting to the grand finale. if Debi can get the additional PET scans for at least the acetycholine measurement into the biomarker study, I promise that the pcc members - there are 11 presently will make a pwp pole dancing video and be available for mjff fundraisers with sponsorship. i also volunteer Carl Heinz as a consultant and pole designer and Bob Dawson on choreography.. you won't mind being our choreographer.

thank you all in advance for agreeing to this non invasive assignment[ha]to advance the treatment of parkinsons.Proceeds go toward PET scans for acetylcholine levels. and assessment measures for pd. if you[debi] are already funding that and doing these pet scans for acetylcholine.....we can talk about other needs that are urgent. i think the transmitters need to be measured and a way found to assess the balance. it seems to me like the oil in the volvo that is never changed and then the whole car burns up from not checking the levels.

Completely off the cuff post but i think its doable for those of us who do what we say we're going to because we can't stop...we are pupose driven and don't know how to stop. ok who is going to take a turn driving and who should we visit? webcast canbe videotaped and shown on the pcc site and this is going to raise some money. we hope fundraisers can be organized for us along the way and i have always wanted to have a parkinson's prom. if mjff is already measuring acetylcholine with pET scan using uncontaminated dye, you've got a video coming in You Tube featuring the choeographed pole dancing of the parkinsonscreativecollective. you all don't mind do you friends? all in good taste with bob as choreographer.

from teacher to public pole dancing - and who said there are no blessingsin having this disease. a smart lady teacher who we wiill have to visit along the way.

this is doable if you have enough faith in what it can accomplish.

it feels good to feel joy and to laugh. with drivers, i do believe this could be done. i don't very often set goals that i can't meet and this one could be fun and make a difference. the book is almost finished , many details to cover but it's happening.

something like this for fundraising takes an adventurous thelma and louise spirit and a lot or prayer. keep it positive. i'll wake up and think i was crazy to suggest this, and thenget on and be ready to go.

sorry for length, oh heck u don't have to read it do we have to always say we are sorry for long posts? i had a lot to explain and no one has to read it. it is delivered in the spirit of good will.

3 August 2009 - Volume 9 - Issue 15 - p 22
doi: 10.1097/01.NT.0000360219.84487.e6
Article
PET Detects Acetylcholinesterase Changes in Lewy Body Disease: Possible Biomarker for Cognitive Problems

Author Information


ARTICLE IN BRIEF Investigators report that Parkinson disease patients in the earliest stages - who have yet to be treated with drugs - show acetylcholine deficits, which suggests that cognitive problems may precede tremor, rigidity, and unsteady gait.


http://journals.lww.com/neurotodayon...in_Lewy.9.aspx

I am not convinced of this. will post then edit so apologize if its a mess.

more serious stuff shortly after my homecoming queen
nomination ....just a scroll or two away. you can't miss it. thank you!

and i am not entirely sure what this is all about, but it sounds like an adventure and i have been worried about what I am going to do when the book project is finished, so count me in. I can drive and you can stay at my house, but i am afraid I must decline the pole dancing regardless how tastfully chorergraphed. I have standards, they're not high, but they are standards.

If this has a chance of getting included based on our efforts then i'm in. We already know that together we're better, together we can accomplish anything we set our minds to. That's a fact. And if it takes traveling around the country doing fund raisers on every corner then we can to that too.

It's this kind of enthusiasm that makes me feel energized and ready to take on the big jobs. We may not have a lot of time but we can make sure to use it well.

I don't know what this is about, but i have to say wow! wow! wow!
That's some 100% pure Paula right there.
Came in through the bathroom window?
No, the song that comes to mind is "What's a 'po boy to do, 'xcept be a street-fightin' man?"

Go for it! Get down and get it on! That's some major rock 'n roll about to happen.

What a great post to wake up to this morning!

I will be taking my mom to IND to discuss her (hopefully) upcoming beta-CIT SPECT scan. I will definitely ask about the acetylcholine question.

I love these ideas. Regarding sponsorship: What about RV America? Also, how about a bank with locations nationwide that needs a little image tweaking after the economic debacle and already funds disease-specific events and the arts? More later....

One last thought. I hereby nominate Paula for the 2011 PD Tour Homecoming Queen. You go, girl!

PS Tell me more about the creative collective please!

...with locations nationwide- you know if you travel around in one of those mobile home / camping bus or trailer, you can park for free, including overnight, in any Wal-Mart parking lot in the USA and Canada. Talk about locations nation-wide; getting to be world-wide. So it's free parking as a start; would Wal-Mart like some added publicity and really join in here? Betcha it depends a lot on whether anyone in the original family-owned business ended up with PD.

A fully equipped tour bus for the rockers of the pd world!
Can we have our own bouncers and roadies.......
and back stage passes for all our pals.....

But I pass on the pole stuff unless you put me in an all in one animal suit!
I laughed out loud at this, for real!

Lindy

the study itself is hidden at the end, and is interesting for many reasons.
but why the reluctance or perhaps even denial that anticholinergics have possibilities for PD? not just from this study but generally.........

I guess working on science from a non-scientist head all day can make one yearn for flights of fantasy and picturing a group of "mature" , well not all of them but some, pole dancing was just the righ amount of silliness needed for my silliness starved brain. i would love to take that road trip tho. these things sometimes work out in mysterious ways so please don't dismiss it! Rose I'll pm you if this takes any shape. It wouldn't be the first time people traveled for a cause - you understand that dreams do lead to action!

lindy, this article says the opposite of what i have thought about acetycholine so here's the way i see it and someone please correct me if in error.

They are saying we have "cholinergic dysfunction" and "acetylcholine deficits." early on in the disease. They also say : " the disorder does not become worse over time in PD patients without dementia, as it does in Alzheimer disease (AD)."

They are saying that acetylcholine deficits are evident in diagnosed pd patients who have yet to be treated and this could be a biomarker. Does that mean they are low in acetylchoinesterase or in the actual acetylcholine? Does being low in acetylcholinesterase mean there's not enough acetylcholine to degrade, which is its job?

Alzheimers meds block this degrading so more acetylcholine becomes available but success is limited and temporary.

I think the terminology is switched back and forth and find it confusing when i read terms like "cholinergic dysfunction."

i can understand why you wouldn't want to take an anti-cholinergic drug to lower your acetylcholine if you have acetylcholine shortage. But I also know that a drug that raised my acetylcholine caused a serious adverse event and one that is anticholinergic is reducing my dystonia, or muscle cramping.

Regardless of whichever is deficient /dysfunctional, it sure sounds like an extremely useful biomarker.

I better go start exercising, need to build up strength for , you know, dancing...lol

Fox org: report: Hull breech! Infiltration underway!
Paula sightings reported!

All indications: you've got some very enthusiastic and knowledgible PD warriors out here, and Paula is a shining example.
Prepare to be boarded!
Let's talk about Paula's speech to us.
The ball is in your court, MJF org.
And all be clear: this is a very friendly game.
This gang only infiltrates where they want to be.

We reserve the flame throwers for the likes of Amgen.

I have not a clue as to the relevance of the PET scans, acetylcholine, or the Fox Foundation as to this particular adventure, but I have long wanted to do an RV tour of the US, visiting PWP. (Not to mention my plan to do the same on horseback ....)

I love to drive; can do so for hours at a time ...........

Big things can have humble beginnings. Do you ride english or western saddle? I tried english (no saddle horn to hold onto) at my high school prom picnic. My friend's horse actually reared up and she went off the back almost cracking hers.

At that point i began a slow slide down the side of my horse, fell off and wet my pants. Sexy!

Our dates hid behind their horses laughing their heads off..

i'd rather have an RV.