Thannks, Debi
 

quoting Debi: "Can you imagine how transformative it would be if a brain scan, lumbar puncture and blood test could, with confidence, tell you what "stage" of disease you are in and how fast/slow you are progressing? It would not only improve information for patients/docs in disease management, but it would reinvigorate clinical trial investment on PD. "

That is hard to imagine after 16+ years (for me) of trial and error in treating this disease. What Fox is proposing is long, long overdue, and were it not for the fact that you have your fearless leader (who just happens to suffer with the disease, also; I don't believe we could ever see such accomplishments.

However, we have our work cut out for us. With health reform being such an "unknown" entity at present, NOW is the time for us to show that those tests mentioned (scan, lumbar puncture and blood test) are covered by insurance, especially Medicare (as it now stands as the US main infrastructure for insuring the aging and disabled.) A battery of tests such as you suggest should not be reserved for only those who can pay - we (patients) must show the cost effectiveness of being able to know such results.

Debi, it would be so great to have a good way to know whether we have pd, where we are with it, and our progression, and it would be transformative, but only if it is done in a way that is accessible to ALL of the millions of people with PD, or at the very least aim to do that.

I am saying this not to, in any way, as a reductive take on what MJFF is doing, quite the opposite really. What would ultimately be truly transformative in a big way would be a way of doing those things that was fast, affordable, non-invasive, and on the lines of the amazing work being done by young Indian researcher Aditi Shankardass with youngsters with autistic type disorders and learning disabilities, that you can find at

http://www.ted.com/talks/aditi_shank...disorders.html

They are having amazing breakthroughs in understanding, and when I saw this, I immediately wondered if something similar could be harnessed for PD

Thanks for all your efforts

Lindy

scores, implications, board game, lollipops in Heaven and sex
 

Hi Debi and everyone,

Despite your faux pas of pairing "lumbar" with "puncture" before breakfast, you and MJFF are a beacon in my predawn sea of discouragement.

On your question, I guess I am the odd woman out. I attempted to use the H&Y and UPDRS tools on my own before I was diagnosed. I understood only enough to scare me. None of my docs then or since seem to take them very seriously, though they all seem to use them. When pressed, my doc confirmed that I would be "between a 2 and a 3" after describing the tools as Debi did…blunt and inadequate. That score, however, was so last year. I've graduated.

As I remember it, the tools were unwieldy. Perhaps the newer versions are not; thanks for the links, Laura!

A note of caution to my peeps who are better able than I to dismiss the importance of these scores. Guess who does look at them, and may or may not take them into account depending upon whether it's in their perceived best interests, and likely don't grasp the while-medicated, adrenaline-hopped or sleep-deprived doctor's visit snapshot nature of these measures.

Who takes them into account? The (USA) Social Security Administration--when evaluating your initial SSDI claim and then subsequent reviews. Perhaps your long-term disability company--when determining your eligibility or reconsidering your eligibility. Assisted living facilities' admissions directors who determine whether you are independent enough to move in or need to go to a nursing home. And possibly others whom we regularly must grant access in order to make practical matters happen. Like everything else our doctors put into our medical files, the paper or e-trail is no longer meant simply to remind them of key information on their way in to see us but also serves as evidence for legal, financial, insurance and other purposes. I know one PWP whose ex-husband used them against her to try to win custody of their children.

So, whether we may prefer to ignore them, I feel safer reviewing them--they actually are included and/or filled out as part of a standard template in many neurologists' VISIT NOTES. I ask for visit notes every time to check their accuracy, and to be sure they reflect my key points as well as my doctor's.

(Disclaimer: those of you in Europe or Canada, or other enlightened nations, probably don't have to worry about these barbaric acrobatics that we Americans suffer at the hands of our power elites and our own inertia. Take a moment and bask in the politesse of your superior health care systems.)

As for the for board game, Bob, I'm in, especially if it educates folks as to the non-medical aspects and implications of PD and prepares us for those battles! "Include respected/feared attorney's name on your initial SSDI application; collect $5,999!" "Get brand-name approval from your insurance company; sleep through 3 nights in a row!" "Finish reading entire clinical trial protocol before MDS enters the room; win $500 Armani reading glasses (or $75 reading glasses and a $475 food voucher)!" Well, you get the picture...

Last by not least: Laura, Stage 6 on H&Y would be, I believe, "post disease duration." That's the stage where we get reincarnated as small furry rodents in captivity! Sad but true. Fair is fair. Take heart though; after that, I am pretty sure we get to be reborn in Denmark. (Paula gets to go straight to Heaven, where she can eat all the dopamine lollipops she likes without getting dyskinesia or cavities.)

Now it's time for coffee, neuroprotective or not. :winky: BTW, of all the crazy things we test for neuroprotectivity, has anyone tested sex?

Oh Rose or by any other name, that is such good writing, such good thinking, such good humanity. Please write more.

Ummm, I'm up here in the Great White North, defending my baby seal meatloaf from the polar bears while praying for a rapid increase in global warming... Canada an enlightened nation... don't get me started... Our doctors are civil servants. They do not work for you. They are paid by the government and they work for the government. As time goes on, they are less and less in charge; the doctor is less the decision-maker; the employer is. The doctor is told how much he gets paid for seeing you. Normally, I get to see a neuro for 15 minutes, 2 or 3 times a year, and that is the sum total of the help I get. Doc is a pill dispenser.
In some provinces, doctors are obliged by law to tell the cops that they have found another Parkie. So, for example, you should not have a driver's licence. Out goes doctor- patient confidentiality, and bad people like some of my friends avoid seeing the doctor because the doc is a stool pigeon for the cops.
Health system here is good in that there is one cheque from the taxpayers; everybody is covered. Bad in that government is by its very nature incompetent to actually run the show. Should be a voucher system. Taxpayer would pay but clinic would not be paid if nobody chooses them. As it is, the hospitals are run like the post office combined with the tax department
And they do not want to hear your opinion, that is for sure. The attitude in some of our hospitals is less friendly than our prisons, according to some PWP I know who have frequented both. Present company excepted of course.

Rose- it took me 3 tries to get on SSDI and my neuro then was surprised when I told him I had to retire. I think he took it personally, he thought he was doing a pretty good job of making me 'look' good. This was before all the good non-motor stuff was out there for me to formulate in words just how incompetent I was. But I never thought about those scores even then. Good point!

Now, Now.........it's not that bad. You wouldn't want a Mirapex addled parkie mind behind a wheel dosing off and killing some innocent bystander.

I guess Ontario is the place to be for the good ones, i.e Lozano etal? Not to mention some of our scientific minds and discoveries.

.
True; or, much worse in some ways or places; much better in others. Personally, have spent days and nights on a stretcher in E.R. 48 hours in the hallway. Aggressively rude staff. Other hospital, same city: professional, care-full, wide-awake, team-work doctors and nurses. Both get paid the same; the ones who do a good job do so out of commitment and generosity, even though the pay is the same if they are just there to put in the union hours.
But I want to tell the Americans they are really good because I find it distressing that America gets so down on itself. I think us other countries have to cheer them up because they brought us lasers and Elvis and pet-scans and Count Chocula breakfast cereal. And a cure for any disease is more likely to come from USA than anywhere else, so we don`t want the AMericans getting all suicidal and pessimistic. At least until after they cure Parkinson`s.

PAN working with Social Security on disability reform
 

Rose - PAN has been working with Social Security to revise how they evaluate PD for disability; you can check on their progress here:

http://www.parkinsonsaction.org/pdform