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!