We all are missing Parkinson Centers equipped with assisted living and exercise facilitities, especially a pool with aquatics. You can't fall in a pool.

two cents from a fractured femur and 3 months of rehab,
paula

Not everyone learned to ride a bike, I am one of those, never could. Have tried static bikes but the angle and weight on wrists gives me trouble. I don't think it is a matter neccessarily of not wanting to do it. As PD progresses things are not so clear cut. Apathy for some, fear of falls, and I did read about speed being disorientating with bradyphrenia. Some get completely normal movement when medicated, others do not get the full range. Its a complex disorder. Those of us who can't look on those of you who can with awe.

My biggest wish is to climb Adam's Peak in Sri Lanka and watch dawn come up from the top. It is not likely though. On the other hand I will happily dance....

Keep on inspiring people, I know you do.........

if i'm asking the impossible or the unreasonable please explain. tks

PS..if one only looks at the cost of administering a test (such as a collecting DNA samples) it doesn’t provide a full view of what is needed to capitalize on the information. While sobering, it is important to view putting all the pieces in place to get useful outcomes. Who will establish the protocols, who will build the infrastructure for collection, who will orchestrate sharing, who will manage questions, who will protect data, who will build networks to find patients, who will pay to analyze data? This list goes on and on taking me back to my first statement science is complex.

We are idea generators and I wish I was paid a fraction of your salary but not a factor. Lol

The factor is you are good at it and have courage and an open mind. The money would come from you, google, and grove, 23andme. NETRP and all of the orgs And last but not least the NIH. Hpw does this compare to getting a drug through the pipeline which in some cases is close to a billion dollars. The only reliable results are from the preclincal work.

I’m asking if it’s possible and could it change the world ? That’s the goal of 23andme.

I realize u have to mine the data.but what data that would be Would also be great to go global but maybe not until it gets going, there wil be plenty of patients to help and recruit for other trials. NEEDLES TO SAY, IT NEEDS TO GO GLOBAL.

the burning question: could this find a cause and a cure ? especially if you also continue PPMI as it is.Can we really go for it and check everything? we need our own lab.


could the price tag be reached?
please crunch some numbers and give it some thought.
Kinetics and u of kentucky and andy grove could work on small molecules and delivery systems and pharmas who stand to make big money could donate and pledge to stick with it;pharmas could have a field day and ole isaacson and others need to perfect skin cells and others. a moral disagreement wil just slow it up. maybe the pig cells will work. i know there are thousands of reserachers but are the academics producing?


Twocents but it could multiply. Can there be stock?can it be incorporated? we are all in this together, we stay hopeful because we have each other.so that bond needs to be --relayed to doctors and orgs. i can't wait for the book to come out.it can make a great display along with foxfinder materials.

There are many nueros. i am requesting reimbrsement for gas; it;s just not in my disability income to drive around the state but i'll give it my all as energy pemits. mY neuro moved to 1st Choice and is on a few tv commercials. they descibe him as a movement disorder specialist and he did a commercial about just parkinson. he listed all motor symptoms - nothing cognitive or mental.'missed half of the problem.

sigh [makes me tired just to think of the ways to see the urgency and deal with it urgently.

what you see on the outside is usually [hopefully] better than you feel. the inside is slowed up and we get constipation [impactment]. slow, hot pee that can lead to frequent urinary traft infection. this kills people and should be listed the pd was what cause the death.

0k i didn't kick on with energy till bout 2:30 -time to listen to music and clean. is dancing with the stars- on tonight. i finally got hooked on it,

sorry so long.we are alll in this together. we must be agressive but patient. not easy for us as we suffer year after year. what makes us calm not is urgency and weed out the the frivolouus science. it testing our whole genome would do as much as we think it have the elusive targets.

last sentence: of u think it will come to testing the full genome anyway then can we do it now rather than later ? many illnesses could test their own.

ok done.

I think the PPMI is an excellent idea. But, why is it only recruting PwP who are newly diagnosed and not on medication?

Using data from all PwP would not only give more data to analyse, good in itself, but also help at answering questions now, rather than in 10 years time, such as:
How does progression at 5 years compare to progression at 10 years?
Are progression markers at 10 years the same as for new patients?
What can we learn from long-term survivors?

John

I think what you are missing is that, for many including me, it's so much easier to sit in one spot and watch life go by. I live alone. By choice. Divorce was the first thing I did post-dx 13 years ago. I am not in the market for another marriage or even a relationship. My hands are full taking care of myself on a budget that consists of my monthly social security checks. I live in a small town, at least a half hour drive from any place that has a YMCA or organized exercise program for the disabled or seniors; no money or space for a trainer at home. Just living my life is challenge enough. I wash every dish, vacuum every floor, change every light bulb, clean the bathroom, do the shopping, fix meals, launder my clothes, walk the dog, clean the litter box, pay the bills all by myself.

I've never accomplished anything grand in the name of PD, or contributed a lot of money. I've never been in a clinical trial, although I'd like to if one were within reach.

I'm fortunate that I have been able to contribute my voice, and that people have listened. What I hope they have learned from me is that, for the sake of research and progress, it is important to include the patient in the conversation. Because it's not until they did (within the last 10 years) has any progress been made on truly understanding the complicated nature of this disease.

What they have not learned is that socio-economics play a huge part in patient involvement in all of the activities for which they seek our participation. I don't think this is because I haven't laid bare my own precarious financial situation when we meet around big conference tables, ten floors above Park Avenue or Broadway in NYC (trips for which they generously pay - and I enthusiastically accept!). I've become weepy more than once, and forceful even more.

And I don't for a minute believe the lesson has not been learned due to indifference. I know they care. But I think the problem is so big and so systemically pervasive that it's easier to look away and try to fix problems that are more easily fixable - like what to do about the blood-brain barrier.

This week I had to make the decision to fill up my gas tank for $50 or buy groceries. I chose the gas. Why? Because last night I got to drive round trip 100 miles to treat myself, my daughter and her boyfriend to an MJFF event in Seattle that was absolutely wonderful. I got to hang out with my favorite MJFF staffers, be queried by Todd Sherer on what I am thinking about these days, exchange hugs and conversation with Debi Brooks, introduce my kids to Michael J Fox, and spend two hours talking to people about the importance of clinical trials and PD research. I felt like I mattered. It meant the world to me!

But it also meant that I woke up today with just enough milk, bread and peanut butter to get through the week, and a half tank of gas to get me
wherever I need to go (or not) for the next two.

Don't get me wrong - I love my life! But it's hard, and I have to make choices that have real consequences. And I make them by myself. I think there are a lot of PwP who are like me, living on limited resources - whatever they may be. Lack of money; lack of everyday support; lack of access.

Is it a problem that is too big for us to solve?

i share your situation except my sister does my bills. i am fortunate enough to have a circle of teacher friends to exercise with. one principal has pd too. i am thinking big because little won't save us.

is it too big? it may be because we may keep taking in the toxin that is responsible for it and some toxins never leave your body.

i prefer to live alone but i do fear falling. i guess we all do eventually. like you say, it's hard enough to get myself thru the day.

While I think this is ideal, frankly it will get us absolutely nowhere with research progress aka cures because everything else involved is so dysfunctional that right now our voice would not mean much of anything.

Let's look at one of the most common chronic illnesses: the ulcer as this highlights what the real problem is. We now know it is caused by a ubiquitous intestinal bacteria h. pylori. The amazing scientist who eventually earned the Nobel prize, Australian scientist, Barry Marshall had to go to extraordinary lengths to have his hypothesis and research acknowledged by his peers. I am listing key highlights from the timeline of peptic ulcer disease and h. pylori.

-In 1875, it was first thought that ulcers may be caused by bacteria.

1958. Greek scientist (Lykoudis) successfully treats his own gastoentiritis with antibiotics.

1964- Lykoudis presents his antibiotic treatment for PUD at a meeting of the Medico-Surgical Society in Greece. He is largely shunned by the medical establishment.

1966- Lykoudis' manuscript is rejected by the Journal of the American Medical Association.

1968- Lykoudis is fined 4,000 drachmas for treating PUD patients with his treatment, which includes antibiotics.

1981-1984- In June 1984, Barry Marshall self infects by ingesting h. pylori after several years of being shut out by scientific medical peers. He takes antibiotics and is relieved of symptoms.

1987- Another scientist also self inflicts.

1994- Realized by NIH, that h. pylori is general cause of Peptic Ulcer Disease.

2005- Marshall awarded Nobel Prize.

How many years did that take? How many millions of dollars? Plug in PD to this timeline or any other malady...how do we compare. Taking us seriously is key, but it is far more important to focus on changing this paradigm. Is MJFF or any non profit research arm helping by accepting and operating within the confines of the status quo? MJFF may fund innovative research but is it enough when researchers who think outside the box are shunned. In my mind, this is our problem; we do not want for lack of research but more from the conviction, passion, and/or courage of people who want to truly make a difference. It can be done now with the money and resources we already have, so why aren't we making any progress? This is what holds us back.

We can talk about e-patient Dave, how we hold the answers, how all it takes is leaving no stone unturned for a cure (MJF), etc. Point is the answers may be a boulder, not a small stone, staring us in the face already, but if the people in power aren't willing to acknowledge it or cut off the lines of creative inquiry because they fear the house of cards will cave or that we will find the emperor has no clothes, having patients directly involved at this time seems futile.

Think of the bigger questions that research fails in: they continue to ignore bacterial roles in chronic disease and they refuse to test for antibodies or immune etiologies to PD and many other conditions. They defy the history of disease; can you think of a longstanding, controlled disease that has no infectious cause? Polio, Syphillis, TB...all of them viral or bacterial in nature. I am beyond words here any more. Look at all our chronic incurable "mystery" neuro illnesses now: Autism, PD, AD, Schizophrenia...even depression is now known to be due to inflammation and most likely autoimmune. This is not rocket science or time travel here; yet, not one of these mysterious, complex diseases have been looked at exhaustively as immune mediated. Why is that?The question is let's look at why the BBB is so easily penetrated and how is it the autoimmune system goes haywire- that is the common thread.

We are not wanted as active participants because we threaten an industry that thrives on us remaining ill for life. The only answer is to establish our own independent think tanks or team of scientists willing to stand out. We have people with the money to do this; think Lorenzo's Oil (movie), but no one with the financial means seems to care or wants risk it, instead they start yet another foundation. <sigh> Do people really believe that this is all that we can do, our hands are tied? Money talks; it can be done. Paula, your idea on the genome would be a good starting point. 23andme is on the right track but could go farther. MS patients are funding their own trials and heading their own research initiatives; we at least now are talking about it? What is the next step?

You DO matter to all of us. Unfortunately not all PWP know you, nor have they heard you advocate on PD matters as many of us who visit this board have.

But I can attest that all PWP are lucky that your voice is heard by the leadership of MJFF and by other leaders in the PD community.

Jean

Nan,

You work tirelessly to motivate PWP to get off their duffs and pedal. I will chime in with my opinion (for what that is worth) and experience. First, think of how many people are loathe to exercise. Dr. Albert and you prove that exercise enhances dopamine, but to make us want to change our habit of lazing about we need immediate reward; exercise gives us a boost but not enough for us to go "Gee I need that and crave it" as in addiction, so it is easier to put it off if we don't note an intense immediate gain or something like that. I am going on memory of an article I read a couple years ago. To compound matters, dopamine can leave us addicted to bad habits or behaviors, and this makes us reluctant to change or upset what feels normal or requires little risk or change.

Take on that normal neurochemical relation to exercise and add in the PD factor and you get even more resistance. Having to pedal your butt off at 80 RPMs means having to admit you have PD. Not exercising is a convoluted form of denial. Pre-PD, exercise was good for us but once you liken it to a treatment it hits home. By engaging in Pedaling for Parkinson's, you have it. These two things can be potent barriers to getting your message across.

Exercise is more a long term reward, so the hurdle is getting people to 1) try it and 2) make it a habit. I did find this other piece that may be of some help: http://nomoredirtylooks.com/2011/01/...ak-bad-habits/

Laura

Jean - I really appreciate your kind words - they mean a lot. But I am not looking for validation that my voice has been heard - I know it has. I'm just afraid that my voice hasn't been heard completely.

We do a lot of brainstorming at these meetings; it is clear that the organizations want our input, are serious about their commitment to improving the research and making it relevant; that low participation in clinical trials is a major impediment to progress.

But I wonder if we are looking in all of the right places for the answers or even asking the right questions. The question usually is around motivation - how do we get PD patients off the sofa and into the (fill in the blank) clinical trial; gym; outdoors; life of activity; exercise program; etc, etc, etc.

What if the answer is, they ARE motivated, but there are too many barriers to participation? Distance, money, time, lack of a support network.

How many times do PD patients who do take part in all kinds of activities say, "I couldn't have done it without (fill in the blank) spouse, child, friend, community, etc, etc, etc.

What if you are without that support? I choose to do it on my own; I'm divorced, try hard to leave my challenges off the shoulders of my young daughter, a recent college graduate with challenges of her own; my family - father, sister and her family - live a thousand miles away and are engaged in something far worse than my Parkinson's, and that is dealing with my mother with Alzheimer's who is institutionalized, a situation that is sapping the life that is left in my father, and already sapped his finances.

And I am one of the lucky ones because even though they are not there to support me physically, I know they love me, and support me emotionally, encourage my participation in all things PD, and help me financially when possible.

But how many of us are trapped in relationships and family situations that are not supportive? We've heard countless stories right here; I've heard countless more at support groups. PD patients struggling to keep their lives together who have lost jobs and live with the fear of losing spouses and children?

These are not people who have the strength, time, or commitment to give to a clinical trial.

Then there are the less wrenching, but more common place barriers to participation like money and transportation. It doesn't matter if the net is cast widely to reach those who are willing to participate in a clinical trial if they don't live within the shadow of the institution that is doing the research. I know that some of you travel far to participate, and that your travel is reimbursed, but it's just not that simple, especially if you don't have the support at home to help make it possible.

I don't think these are problems that it is up to the orgs to fix, (in many ways our social infrastructure is broken, and neither the Democrats or the Republicans know how to fix it), but they must figure into the thinking of those who are trying to increase participation.

What I find most disturbing is that there doesn't even seem to be a desire to understand the nature of the challenges. I and others (most notably AJ Wasson) have repeatedly brought the idea to various orgs, national and regional, to do some sort of socio-economic survey to learn more about how PD patients live, but to no avail. (I did see that the Los Angeles Chapter of APDA is doing one - bravo!).

And I know that there is a lot of general discomfort whenever we bring up this kind of stuff at meetings - often because we can't talk about such things that are so personal and close to our hearts without crying (I'm sorry!).

And, really, what are they supposed to do with the information? Repair relationships? Fix families? Restore lost jobs and wages?

The answer is to cure and treat the disease. The conundrum is that they can't do that without our help - and the disease has undermined our ability to do so.