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Topic Warning! He's ranting again! Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.08.25 00:42
A post was made about Deep Brain Stimulation being tried to slow progression of PD. The poster summed it up in the last sentence, "I'm not at all sure I would want DBS at any stage if I had PD, but the possibility of slowing the disease would be a goal worth trying for."

As We've said or say right along here on the forum everyone seems to get their own "package" of symptoms and rate of progression with Parkinson's Disease. That is one of the many things that make treatment so difficult. We're all different this makes it so difficult to tell Who will develop which set of problems. This makes rate of progression so hard to tell. Parkinson's Disease isn't a this is followed by that after x amount of time. It is beyond Me how anyone can or could claim one thing or another slows the rate of progression. However it does make a great goal (excuse) for obtaining funding I mean Who wouldn't want to arrest the progression if one can't find a cure?

On another note; The Young Parkinson's Newsletter has f.y.i. Dopamine Imaging now Available. In January GE Healthcare got approval for DaTScan (tm) an imaging drug (I-123 loflupane) injected into the blood stream it can assist the Doctors in assessing the integrity of dopamine receptor in the brain. It CANNOT however differentiate between different forms of Parkinsonism or be used to make diagnosis of idiopathic PD. It is most useful in identifying other tremor and cognitive disorders like essential tremor and Alzheimer's disease.

Sigh...what's that doing in a Parkinson's Disease newsletter? Hey great news we've found another thing that doesn't help you!

I don't know I guess it's getting me down tonight. Researchers preying on hopes of patients. Hopes of slowing down progression, hopes of cure. Hope of a normal life! Hopes and dreams used for funding their labs, research and jobs and not delivering. Just give them more money! I'd be fired, you'd be fired if We didn't do the job we were hired for.

Perhaps it's time We the Parkinson's Community took a hint from world events? There was the Arab spring, let's have the Parkinson's fall (no pun intended)! People are fed up with the way their money is and was spent in Washington! People are upset with the way our elected officials conduct business and Themselves! Why aren't We upset with our researchers and the way our research money is spent? Why aren't we upset because our research money is pooled into umbrella projects with other disorders?

Why do We, like Charlie Brown trying to kick the football Lucy is holding, keep falling for the same old lines year after year? Why? Because those lines seem to work on Us. Nothing will change as long as We keep letting them go on status quo. Like sheep we'll continue, research shepherds guide Us along with just over the next hill is a grass to slow the progression. Well I've rambled on enough for now. There's some food for thought in this, I've been in these trenches for awhile folks and it's pretty damn repetitive! I hope You are around for a long time too. If so You'll see what I mean. Unfortunately, everyday new diagnosis's are made and a new batch of hopes enter to be exploited by "We're trying to slow progression and lots of other neat stuff like that pretty cool huh?"

Till next time, take care, best of luck and hang in there!

By susger8 On 2011.08.25 09:09
I always enjoy your rants!

I work in the area of clinical research, and in fact my expertise is in CNS. (Disclaimer -- I am a biologist, but not a nurse or a doctor.) It is possible to show a change in the rate of progression in a clinical trial. You need enough patients in the trial to compensate for the variability in the patients' conditions. There is always a pre-planned statistical analysis. It's not like someone just eyeballs the data and says, "yep, it worked."

The CNS field is a very difficult one. Most psychiatric and neurological conditions can't be measured physically. You can measure blood pressure, glucose level, the size of a tumor, etc. -- but for CNS conditions, you are going to be working with rating scales. (For PD the primary measure is the UPDRS scale, which measures cognition, activities of daily living, and motor function.) Rating scales are subjective. There is a lot of variability in how they are scored. It's not easy to show a statistically significant effect.

Add to this the challenges of working in an area of medicine that is still not well understood.

But, researchers are trying. You have to find a lot of stuff that doesn't work before you find the thing that does.

Sue

By LOHENGR1N On 2011.08.25 19:54
Sue, glad You enjoy My rants, I enjoy writing them for the most part. (good therapy for Me). That makes a cute commercial you have to do a lot of stuff that doesn't work before you find something that does as in Thomas Edison invented a couple thousand ways not to make a light bulb before inventing the way to make one. I could come back with statistics lie and I've got the data to prove it, but that does no one any good.

Everyone here has themselves or someone in the family with Parkinson's Disease or a close dear friend with it. (You and I included) For far too many the window of opportunity has closed. For far too many the window is closing quickly. We cannot wait around for lots of things that don't work. I imagine it is frustrating for You in the field but you must also know how frustrating it is for Us all. For far too many years the promise was made with funding in 5 or 10 years we'll have a cure and now 20 or 25 years later We who still survive are hearing this repeated! It sounds great to those newly diagnosed but to We "old timers" it rings empty our window is closing. Please don't get Me wrong Sue I'm not attacking You. As you said the field is still not well understood. I applaude You for saying that! That's all that needs to be said not empty promises or false hopes of the cure coming tomorrow (which we all hope by some unexpected event in research it happens) just tell Us the truth! I'm not trying to dash hope either, without hope the future is bleak at best. Just level with Us. That's all I ask from the Researchers in the news.

Many studies are done with or for newly diagnosed to slow progression, while this is great what about those who are 15, 20, 25 or 30 years into this disease? at times it seems they are lost, ignored or over looked with research. Yes it's good to slow progression if it can be done but don't those who are aged or well along in Parkinson's deserve to have their progression slowed too? I don't have the answers and I know you don't have the answers either. But I do know that this Country wasn't built upon nor did it become as great as it is by any attitude of we're going to make lots of mistakes, a whole lot of them before we get it right or find one that works. What I'm saying is that all that does is set up for failure and an expectation for failure. For Myself, My Fellow Parkinson's Disease sufferers (Male and Female) Young or Old that is unacceptable and Those spending the research money and those receiving it should be told that loud and clear!

Well before the village gathers with tiki torches and pitchforks to come and get me I'd better quit for now. Take care, best of luck and hang in there

By susger8 On 2011.08.25 21:02
It is really tough for those who have had the disease for some time -- because the damage may already be done and might not be easy to reverse. You already know that most of the dopaminergic cells in the brain are already dead by the time we get a diagnosis. It may be easier to show an effect with patients in an earlier stage, who have less damage. Often the strategy is to get approval for a limited patient population initially, and then do the (more difficult) studies to extend the labeling to a wider population. But, when you are the patient, or the patient's family member, it's hard to be patient! (Pun intended.)

Clinical research is a very very slow process. It takes ten years or more for a drug discovered today to reach the market. For life-threatening diseases it's sometimes possible to speed that up some, but currently the FDA is very conservative and is not inclined to rush an approval.

You know how the news media like to make everything dramatic. That goes for news reporting of scientific research too. They will make a very early-stage finding sound like the cure-all we've all been waiting for -- then you read the details and it's still in the mouse stage. And researchers also can get very excited about new findings. It's just hard to grasp (for me, too) just how few of those early discoveries actually pan out, and how long it takes to get anything to the stage where it helps patients.

I don't imagine it makes you feel any better, but there will continue to be a lot of interest and effort put into chronic neurological conditions. The population is aging and more and more people will be getting PD, Alzheimer's, MS, etc. So, it is a big potential market, which is motivating for researchers.

My gut feeling is that ultimately it will be stem cell research that will knock out PD and hopefully other neurological conditions. But I'm not expecting this kind of discovery to appear in time to help my dad.

Sue

By ILoveWil On 2011.09.05 16:41
Lohengrin, I love your rants too. Somebody's gotta say it. My concern is that there are louder voices in Washington, DC calling for greater funding for aids and cancer. Even with Michael J. Fox and others like him, the screams on the other side are louder. I lived there for the past 34 years before moving to the Smoky Mountains where I grew up as a Cherokee child. Politicians in DC are corrupt, even tho I had a few good friends in the group who were honest and some who even helped me with Indian youth and a Presidential Proclamation declaring November as National American Indian Heritage Month. So there is hope.

Please keep on your soapbox and be encouraged by all our support. Can you pick up your volumn a little....yell a little louder.

Thank you for your encouraging responses to my recent loss of my dear Wil. I appreciated them very much.


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